I had blood tests last September which confirms I have auto-immune thyroiditis (Hashimoto’s). Plus other issues which may be drug interaction related.
I asked for a referral to the local NHS Endocrinologists (Norfolk and Norwich University Hospital and was given a Choose and Book set up where there were no appointments and on ringing the hospital no appointments were available so we were sent a letter advising we’d be sent one once available.
I have just chased the GP Surgery and they say they have been told by the hospital “They can’t/won’t do anything” and have cancelled the referral
From what I understand I probably need T3. This is based on extensive reading.
I am aware that the Norfolk CCG have double blacked prescription of T3 which is probably behind the decision.
As far as I am aware this is in contravention with NHS England Guidelines.
On treatment of LevoThyroxine 2000 mcg/day my abnormal/low borderline bloods are as follows as at 1 September:
** For anyone responding, it's worth looking through this member's past posts as there is a complicated health history here.
helenshubby I'm confused, in your private message to me you said they were your wife's results, then go on to say "my abnormal/low borderline bloods".
If we are talking about your wife, you've already outlined her very complicated health situation, and I pointed out that I am not medically trained, nor is anyone on this forum as it is patient to patient, that I have no experience of any of the issues you wife has nor the medications that she is taking so I'm afraid I can't help with the majority of these test results.
I can comment on these:
B12 524 (130-1100)
It's necessary to know if this is pg/ml (same as ng/L) or pmol/L. If it's pmol/L it's pretty good, if it's ng/L it's slightly lower than recommended. However, serum B12 is the total of bound and free (Active) B12. You can have a good serum B12 but a low Active 12 and it's the Active B12 that is free to be taken up by the cells so it might be worth getting an Active B12 test to rule out any deficiency.
Folate 16.3 (2.7-15.0) On Ferrous Sulfate
Is she on the ferrous sulphate for low iron?
Ferritin 179 (23-300)
This is OK, a minimum of 70 is needed for thyroid hormone (our own or replacement) to work properly, recommended is half way through range.
You need to get her Vit D tested.
Thyroid peroxidase 243.4 (0-34)
This confirms Hashi's, which you already know about.
TSH 0.04 (0.35)
Serum Free T4 15 ((8-21)
Free Triiodothyronine 4.1 (3.8-6)
You've said you want your wife to have a trial of T3. FT4 is 53% through range, FT3 is 14% through range. I think a trial of T3 would be a good idea, or changing to NDT.
Sorry "my" was a typo in the context of this post, some of the text is part of a complaint letter to the hospital as they seem to be avoiding the NHS England Guidelines by not letting her see an Endocrinologist. Hospital is in Special measures btw.
While you say my wife's history is complicated can I point out the complications predate the onset/diagnosis of Hashi's Susie and are unrelated in the main. She's on the ferrous sulphate for for iron deficiency anaemia, and vitamin D for low vitamin D. The Calcium came with the Vit D and given her mother has osteoporosis is a good preventative. We believe the blood count issues may be down to the treatment with tegretol for absence attacks (4) some years ago as we have historic records of low neutrophils going back a considerable time. At the time Helen was working in a supermarket that used fluorescent tubes in its cold storage fridges in store and its credible that they could have triggered the attacks and I know for a fact the second set of attacks were in the presence of a flickering light. Interestingly I had a full blown seizure directly caused by tiredness alcohol and a flickering light. I'm going to see if we can wean Helen off the Tegretol and we can monitor her bloods to see if it makes any difference. The Consultant we saw says that some of the other borderline/abnormal bloods may be a side effect of the Hashi's.
Plan is to finish the steroid course, get all the necessary bloods retested and probably take ourselves off to one of the Endo's prepared to prescribe T3 on trial and if symptoms improve insist on NHS funding. Luckily we can self fund if necessary but as both of us have worked 40 + years each we should be being treated under the NHS.
I am seeing my GP Tuesday and Helen will be going too as she has to push me in my chair so we can discuss it with him then.
Checked the results and B 12 is ng/l which suggests its on the low side. From what I've read a slightly higher T4 if we can get it there can be helpful and T3 is downright low at 13% of NR.
You wont get a doctor to agree that her Serum B12 is low. But according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
As I said before, serum B12 is the total of bound and free (Active) B12. You can have a good serum B12 but a low Active 12 and it's the Active B12 that is free to be taken up by the cells so it might be worth getting an Active B12 test to rule out any deficiency.
Also see a recommended endocrinologist off the Thyroid UK list privately. Then assuming private trial of T3 goes well, insist on care being transferred to NHS
Pick a well recognised, NHS endocrinologist of the list who also sees patients privately
GP can NOT prevent a patient seeing specialist privately
Apparently there is an Endocrinologist in Norwich who believes T3 is a placebo.... We have the list of recommended Endo's who I will be discussing with my GP next Tuesday when I see him about my problems.
Thanks, our GP is very supportive and has already suggested that route. Thank goodness that while not flush we have a few coppers to spare. Also going to make sure that when we do the bloods we get all the ones noted down here.
Please note I have no medical training and know almost zero about liver function tests, so I can't comment on the results in any sensible way. I wouldn't be happy with her results though.
Also, her Full Blood Count results don't look that great either but I'm sure a doctor would say they were fine. You mention ferrous sulfate next to the folate result. Ferrous sulfate is an iron supplement, not a folate supplement. If your wife struggles with taking iron (many people find it very irritating to the gut) there are lots of alternatives, and be aware that pharmacists can sell prescription-strength iron supplements without a prescription. Many people prefer ferrous fumarate 210mg to ferrous sulfate :
Your reply is helpful, bilirubin is 6 not as put down. Apols. Helen is on 200 mg Tegretol twice a day, 60 mg Paroxetine, 200 Mcg Levothyroxine, Calcium 400mg twice a day & Vitamin D, and Ferrous Sulfate 200 mg twice a day (I think I have some medical knowledge as I worked as a Life Underwriter with Aviva for 40 years so am not happy with the bloods. Current regime is Thyroxine & Paroxetine (no interactions) am well before breakfast and we've got rid of Crunchy Bran in favour of Rice Crispies. I think she then takes Tegretol later followed by Ferrous Sulphate followed by Calcium in the afternoon and Ferrous Sulfate at teatime followed by Tegretol at night. Currently trialing Prednisolone after seeing ENT guy at Norwich Spire to try to reduce the inflammation. 8 weeks left at 5mg. Started at 20 mg and reduced to 5.
We think some of the low bloods may be due to the other drugs particularly the Tegretol and the effects off the Hashi's on her metabolism.We need help but the hospital won't help.
helenshubby are either of you in the Thyroid Support Group Norfolk on Facebook? I help to run that group, and I'm in the newspaper article link from SlowDragon . If you're not, please do join us as soon as you can, and we'll help if we can.
Norfolk CCG has been very anti T3, hence we started our campaign 18 months ago. Have you been told that they will not prescribe T3? If so, when was that? They are in theory now allowing it from an endo, but we have no evidence of that yet. Feel free to send me a private message on here.
TaraJR, Bloods were taken 1 September and confirmed Hashi's. GP referred straight away to Endocrinology. We got choose and book and got no Joy. Letter 10 October received advising we'd get appt in due course. I have my problems as I had a Colostomy 21/12. I rang our surgery to chase last week and they had heard nothing. They said they would look into it and spoke to us Wednesday.
We were told Wednesday that the Endocrinology department can't and won't see us and had cancelled the referral. This is in breach of NHS guidelines. No reason was given by my GP's PA.
I have signed up to join your group.
I have filed a formal complaint with the N&N about this as of Thursday. I also have a complaint going through on my own diagnosis as it was a crap experience. You can contact me direct on <redacted email address> and I can provide full contact details to chat. We really need help as we are at the end of our tether as we are both not well
People can click on your name to personally message you. Be careful giving your own email out? So sorry to read your difficult time on your post. I love all the advisers on here, what a wonderful site.
If people post personal email addresses inadvertently, you could report the post - use reason "other" and type a few words. One of the admins will dive in and redact the email address as soon as the report is noticed.
I have read a few of your past posts and noticed that several people have commented on your wife's calcium intake, and why it isn't a good idea without testing calcium level first. If your wife's calcium level is already well within range then adding more is likely to just end up lining her arteries. You mentioned osteoporosis - better supplements for that are magnesium, boron, vitamin K2, and vitamin D. Calcium is one of many minerals and vitamins essential in bone making - taking that (particularly if it isn't needed) and ignoring the rest will just end up making bone which is brittle and fragile.
Regarding breakfast, and which cereal is the "best" to eat in the morning. I've been using this website on and off in recent months, and none of the recipes involve eating cereal in the morning :
and I've found that I'm getting quite a lot of benefits from eating a lower carb and higher fat diet, including reducing painful inflammation levels. It would be worth trying. And weight loss isn't an essential part of the diet - the diet can be adapted according to your needs. What it does is improve health. It would be worth your while investigating.
Regarding Tegretol, if your wife needs a treatment for epilepsy, is there another one she could try? I found this :
The Calcium level appears OK ON treatment bang on middle of range serum Calcium 2.29 and adjusted calcium concentration on treatment 2.36 (2.2-2.6) so that seems OK.
We are convinced the epilepsy (absence attacks ) were triggered by flickering lights.It is implicated in the low neutrophils and Helen's levels have fluctuated around the 1-1.5 levels since at least the time she started it. The trouble with polypharmacy is that interactions can send bloods and other stuff haywire. Helen has decided to cut out the evening tablet which was taken immediately before bed and I do wonder if there is some impact. If you've read above I've had a flicker related seizure myself and I think we have low epileptic thresholds as both our EEGs were not normal (I have a positive FH in many relatives.
Re the email I posted its an alias and not my main email anyway, which is why I posted it.
I'm not convinced on the low carb diet, we are well into fruit, vegetable and fibre and meat consumption isn't vast, Chocolate is a weak point though especially for my wife I can take it or leave it and we don't go overboard.. Also use oat bars. I doubt food is the issue as our diet has been stable for years and Rice Krispies don't have bran which flushes thyroxin through quickly and since starting it has noticeably cut down toileting before leaving for work. Routine its an issue but my wife is finishing in June.
Having looked at the alternatives (my wife doesn't have time to prepare meals with lots of the recommended stuff we worked out Rice Krispies were the least bad of the worst. We are now managing to get her thyroxine in at least an hour before breakfast to. We don't have the D3 levels but HBA1c is 35 which is OK. Just says Normality with no Reference range reported.
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